Family Communication in Palliative Care (Wagner, 12/3/2025)

 A recording of this presentation is available HERE.

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Thanks to Dr. Andrew Wagner, who gave a really thoughtful and important Grand Rounds this week entitled, Palliative Care Pearls. He spent the bulk of the time showering us with pearls about how to connect and communicate with patients, particularly at the end of life. He touched on spirituality in medicine and lifted up the notion that good communication is good medicine. The sound quality on the recording isn't excellent, but still is worth watching so that you can experience directly his wisdom and experience.

I highlighted the key pearly questions in bold below. 

He highlighted listening and relationship, generous listening, and presence/compassion/empathy. He talked about how death is a part of the life cycle (not a failure) and that healing is coming to peace with mind, body, and soul relationships with spirits on a higher power. If we reframe death as a life cycle event, we can help patients find peace.

One question: "What needs to happen so you can lay your head on your pillow, and say 'I am good'?"

Dr. Wagner talked extensively about centering the patient's identity, values and meaning, which lends itself toward shared decision making: align decisions with values and what matters most, explore "what are you hoping for and what are you most worried about"?, present options in terms of burdens and benefits, and ensure patient and family understand prognosis realistically.

We have the opportunity to offer "a sense of calm", which can be achieved by making eye contact, touch (if/when appropriate), reading the room, modulating voice, sitting down (and ensuring everyone has a chair), arranging the room. 

Another possible question: "How are you doing? How is this going for you?"

Imagine if we regarded death as a final stage of growth. Could we then turn toward death as a master teacher and ask "How then shall I live?"

A third question: "What do you know about what the doctors have been telling you?"

Normalize things for patients, "most people in your situations are anxious/fearful-- how are you doing?", OR "Many people are afraid of dying, is that you?"

Palliative care is understanding people's values and goals and creating care plans that are consistent with those values and goals. Everyone gets tired and frustrated with serious illness, but if someone is feeling that way consistently, "it's important for you to tell us that because there are care plans for people who are tired of doing those things". 

When dealing with surrogate decision makers, it is extremely important to help the surrogate bring the patient into the room: Tell us about [Joe]. Who was he? What did he love? What made him happy? What was important to him?

A fourth question: "Imagine [Joe] had a crystal ball and could hear all the things we have been talking about; what would [Joe] say?". And then a follow-up once you have elicited Joe's ideals, "I recommend, given what we know about what [Joe] cares about, I recommend . . ." (is this consistent/not consistent with Joe's values.

Dr. Wagner reminded us that physicians can and should be more directive when it comes to Code/CPR decisions.

And when it comes to families that do not want information disclosed to patients, try this fifth question: "I understand you don't want me to tell grandma, but is it okay if I ask grandma if she wants to know more about what is going on?"

Lean into the mystery. Nobody knows.

He also reminded us about self care-- I am enough (see below) and I am not alone (we have teammates, colleagues, chaplains, pastoral consultation), and we should be sharing stories as a means of self-healing.

For those of you interested in the resources he references, here are some:

• Rachel Naomi Remen, MD (Kitchen Table Wisdom and My Grandfather's Blessings) "Healing and the Inner Life: The role of clinician is witnessing>> connection>>healing
• "I am enough" (this he lifted up as important to physicians to remember and recite before stepping into challenging situations. We meet patients AS THEY ARE; our presence is enough"
• "All healing is mutual" (physicians are also healed by the encounter)
• Generous listening-- listening to understanding, NOT fixing, the quality of listening 
• Blessing each other-- seeing wholeness beneath illness
• Ira Byock, MD "The Four Things:
• Please forgive me
• I forgive you
• Thank you
• I love you
• Balfour Mount, MD "Human Question": What would you want me to know that will allow me to give you excellent care?
• Harvey Chochinov, MD, "Dignity Therapy"
• continuity of self: "What do you most want remembered about you?"
• role preservation
• generativity
• hopefulness

Finally, some clinician take-aways: 1) holding safe space 2) healing at the end of life 3) honoring intuation and wisdom ("trust your gut, your intuition, your wisdom"). A final useful statement: "We are helping [Joe] to die".

Yes, Doctors Can Cry Too: Addressing Physician Grief and Moral Injury (Pedraza, 5/26/2021)

Muchas Gracias to Dr. Ruth Pedraza for an important presentation this week on Physician Grief and Moral Injury. Dr. Pedraza was the chief resident in charge of the inpatient adult medicine service at SSRRH during the peak of the COVID-19 pandemic in Sonoma County (mid December through mid January of this year). She lead her team with grace.  Please take the time to watch a recording of her wonderful and relevant presentation HERE.

For the readers, here are my notes, but first my personal take home: we health care providers, need to acknowledge that this job is HARD, that the pandemic made a hard job harder, and we all have tons of unprocessed grief that we need to address. It doesn't matter if we are just at the beginning of our career or winding down, or somewhere in between. The weight is real.

As Dr. Pedraza said at the start, "The culture of medicine is so so rushed, and sometimes it can deny us the right to stop, to process, and to grieve. I did not feel prepared to support my team for such a traumatic cycle. I did not know how to honor our patients, I did not know what was appropriate."

Each flame in this image represents a patient death on the Adult Medicine Service during a four week cycle 7, mid Dec 2020-mid Jan 2021 (75% from COVID)

Physician grief

What is grief? An emotional and physical response to a loss. That loss can be death, but other losses can also provoke grief, including a divorce, losing a friend, losing a job. This has been a year of losses. Emotional grief reactions may include anger, guilt, anxiety, sadness, despair. Physical grief reactions may include trouble sleeping, changes in appetite, physical problems, or even illness. Grief and mourning are different, though we often conflate the two; grief is internal, mourning is an external expression (e.g. crying, art, music, prayer, journaling, etc).

How do you grieve? 

Dr. Pedraza reminded us of the 5 stages of grief, outlined by. Dr Elizabeth Kubler Ross (Swiss psychiatrist), based on her work with terminally ill patients (see image below). Initially it was thought that everyone experiences these stages in a linear fashion, but now we know some people may skip some, never experience some, get stuck in certain stages, etc. The truth is that people's responses to grief are very different.

Many physicians witness death in our professional lives, but we have very little training, acknowledgement, and inadequate space in the medical culture to process our own grief appropriately. Physicians experience emotional exhaustion, isolation, shame and guilt. Unprocessed grief leads to trauma. In some ways, our profession punishes doctors for grieving. 

We know that physicians can engage in negative coping mechanisms, which can be dangerous for our patients AND our personal lives and families. These may include alcohol, drugs, even firearms

Do doctors grieve when their patients die? Dr. Pedraza cited a powerful study by Granek et al from Canada, interviewing 20 oncologists varying in age, sex, ethnicity and years of experience. She found that oncologists struggle to manage their feelings of grief with the detachment they felt necessary to do their job. More than half cited feelings of failure, self doubt, sadness and powerlessness. 

She also found that grief in the medical context is considered shameful and unprofessional. Even though doctors wrestle with experience of grief, they often hide their feelings because it is considered professional weakness. The single most consistent finding in these oncologists was the description of compartmentalization with regards to patient loss. 

Compartmentalization is a pretty natural impact of continual loss. Denial, disassociation to describe death of a patient-- leading to unacknowledged grief. Leading to distractedness, inattentiveness, irritability, emotional exhaustion and burnout. They also admitted that this would lead them to provide more aggressive chemo, referral for clinical trial or suggest surgery when actually palliative care would have been a better option for that patient. Also impacting ability to communicate with patients about end of life discussions. Half admitted distancing themselves from dying patients, less overall effort toward the dying patient.

Do you compartmentalize? How does that manifest in your care of patients? What about your care of loved ones?

What is the physician culture about crying and expressing grief? We all express sadness in different ways; there exist generational differences, gender differences, and specialty differences. What about crying in front of patients? Is it acceptable? Is it unprofessional? The prevailing belief in medicine is that physicians should be composed and calm. While it is expected that it may happen, it's expected to occur in a private place. 2009 study noted that 69% of students, 74% of residents self reported crying due to patient losses

viral photo (and words) Southern California ER MD after 19 year old patient died

The truth is that patients desire care from doctors who are connected and feel their emotions deeply.

Have you cried with a patient? How did that go? Have you tried not to cry with a patient? Why?

Moral Injury

Reframing clinical distress. There is an increasing awareness of working in medicine, critical care, and terminal illness

Burnout--a constellation of symptoms (malaise, fatigue, frustration, cynicism inefficacy) that arise from making excessive demands on energy, strength or resources in the workplace-- is an important notion in medicine, and more than half of physicians experience these symptoms. However, many clinicians have resisted this characterization because it doesn't quite encapsulate what many physicians feel. 

In 2018, Drs. Talbot and Dean wrote an article on the Moral injury; it was titled Physicians aren't "burning out". They are suffering from moral injury. You can find that paper here. 

The notion of moral injury is most often described in Vietnam Vets, returning from a war they didn't believe in. 

Moral injury occurs when we perpetrate, bear witness to, or fail to prevent an act that transgresses our deeply held moral beliefs. In healthcare, this equates to systems issues that prevent us from putting our patients first.This is an oat that is the core of our working lives. As clinicians we are increasingly forced to consider other demands: EHR, documentation, insurance company, hospital administration. Every time we make a decision that conflicts with our patient's best interest, we feel a sting of moral injustice. The cumulative effect is moral injury.

Whereas the treatment for burnout is affirming individual coping skills (e.g. yoga, mindfulness, wellness retreats, and meditation practice); the treatment for moral injury is aligning the system's goals with the physician's goals. It is absurd to believe that yoga will solve the problem of treating patients who cannot get the correct medical care, having 12 minutes to discuss huge life choices with patients. The moral injury of healthcare is being unable to provide high quality care and healing in the face of our system. So many parts of our medical system prevent us from spending time with patients, fear of litigation causes us to overtest and overtreat, patient satisfaction scores can silence physicians from providing necessary (but unwelcome) advice to patients.

Does the notion of moral injury resonate with you? How so?

The COVID Burden and Unanticipated Grief

The pandemic has brought grief to a different level for many of us. 

ICU Physician Perspective. Consider reading  this reflection by Dr. Thanh Naville (UCLA ER physician) titled "I am an ICU Doctor. I am haunted by what I've seen during the recent COVID-19 surge."  She speaks to the notion of how COVID-19 made it impossible to fulfill her own mission statement: help people. How her sense of defeat has been palpable. 

Let's not forget the disproportionate effect of COVID on poor communities and communities of color. This also was palpable this year at SSRRH.

And, lest we forget, the outpatient providers were also impacted tremendously. As quoted one outpatient family physician: "I may not have the acute wound of watching people die of COVID in the hospital, but I have a chronic wound. . the space of holding for death of family members."

What are your wounds from this pandemic? How can you help yourself heal these wounds?

And it's not just health care workers. Our entire communities are grieving loss of jobs, contact, community, travel, etc. We need to grieve as a community. It is okay to cry. Allow ourselves the space to rest and heal.

How can we address Physician Grief?

We may all grieve differently, but grieve we must. For our own good and the good of our patients. Different ideas: death talks, professional grief support, didactic preparation for med students and residents, death rounds (for trainees), personal awareness, writing of clinical obituaries. Many other ways. Each of us must determine most effective personal style for resolving patient loss.

If you need help, here are some resources for physicians, compiled by Dr. Pedraza.

https://www.physiciansupportline.com

https://fixmoralinjury.org/mental-health-resources/

https://mysonomastrong.com/

https://fwcp.org/